The End of Privacy?

continued  Gilroy's most emotional moments come from grown kids coming up his stairs looking for parents. This is often their place of last resort.

"We had one young lady who -- and I kind of felt sorry for her -- she went through I guess four or five men who were tested. She was really trying to find her father. Her mother was even cooperating in the testing. We tested and retested all of them, or all but one of them, and one of them was what we called a grandparentage study. The man they really wanted to know about was dead, so they were testing the alleged paternal grandparents. Two labs found the same thing exactly; none of these four or five men were her father. She left us still looking for her father."

DNA-based paternity testing has been a mushrooming industry since "about 1987, as far as actually being applied to resolve cases," Gilroy says. Now Gilroy has bigger plans for his lab. With the Human Genome Research Project aiming to identify 80,000 human genes, and as a result able to pinpoint warning flags of many diseases, he sees DNA testing as having a far more spectacular future.

"We'll probably get into other kinds of genetic tests," he says. "Genes that predispose to heart disease, different types of cancer, alcoholism, and various other things."

Such tests can only do good, he believes, just as his current paternity service does. "It's real clear when you can give these results to people that some of them feel like they've been tremendously helped by learning the results; it clears their mind."

But medical bioethicist Art Caplan says this power to predict lives has real dangers.

"People think they have a lot more privacy than they've got. They don't understand the threats to their privacy posed by things like DNA information," says Caplan, who runs a bioethics center at the University of Pennsylvania. "You don't want to get in a situation where people's DNA is FedEx'd around the country willy-nilly to anyone who wants to take a look. You also don't want to get into situations where people run by and scrape something off the chair you just sat in. You can get DNA from all kinds of things. Kleenex tissues, something left in the bathroom, sweat at the health club.

"Remember, we're in our infancy. We don't have very good genetic tests still for most things. But soon enough we're going to have [DNA] tests that will say who's schizophrenic, who's dyslexic, who's likely to have a neurotic personality... A lot of behavior and personality as well as diseases have a strong genetic influence. I am not a believer that genes are everything, but they're powerful."

Caplan says there are no federal privacy statutes specifically governing this genetic information. "There is no information about consent to release DNA to others. There literally is no law prohibiting someone from taking DNA from a public place like a rest room or a hospital trash bin and using it or analyzing it. It's waste material. So it's this very interesting set of coded information that reveals much about us.

"If you think about it, not only do you want to protect [DNA's] privacy for people testing and finding out things about you, but you certainly don't want to see the day come when cloning is possible and they can reproduce you without your permission. From a Kleenex."

But aren't we talking science fantasy, at least in the present?

No, says Caplan. "We've seen DNA testing appear in criminal areas in forensics. So we know that people have gone to jail from DNA sampling of leftover tissue material. And they've been released from prison on the same grounds. So it's not fantasy. It's happened in the criminal justice system already."

Caplan understands the call to take DNA from a dead person if it helps the living. "It's understandable that people want to find out biological facts about ancestors or parents or siblings. But if I wanted to know if you were my brother, I don't have any right to force you to give me a sample of your blood. I can't invade your body to answer my question. And I think that your right to control your genetic information should extend even to things that are left behind, that fluff off of you, sort of dripping off in different ways, whether they are excreted, flaked off, I don't much care. It seems to me they are still yours, and people should have to get your permission before they can use them. And even if they find them, so to speak, in the street or on the proverbial toilet seat, there should be laws that say, 'You can't release this information unless you've obtained the permission of someone.'

"We have nothing like that [on the law books] here. There's nothing like that in Europe either. Those protections do not exist."

The most insidious influences, Caplan predicts, won't be government coercion but commercial persuasion. "I would see a time when you'd be [held] 'irresponsible' not to test your mate, let's say, before you had a baby. It becomes the responsible thing to do -- to [test for propensity to] diseases, make sure your mate will make a perfect baby. I think that's the direction that genetic testing is going to go. Normally we think of it as something that is forced upon us by government or the military or big business. But in American culture, instead of being forced upon us by an insurance company, it's much more likely they're going to be sold to us, by commercial companies interested in providing testing. 'Check her out, before you do it.' "

The vision of the line being drawn between the "qualified" and the "nonqualified" is at once enticing and frightening. Will TV ads and science succeed in creating Hitler's dream of the "perfect race" where Hitler failed by brute coercion?

"I don't really see that it's a huge problem at this point," says Gilroy. "I do think that we will see more thought put into this as more genes become available and more people become interested in their genetic makeup. I guess there are still some things to be settled, [but] issues of insurance companies and employers are pretty old ones now. I was studying this stuff back in the mid-'70s, and these things were already being talked about."

Caplan is less optimistic. With the specter of national DNA data banks and ready access to them via the Internet and no limiting laws in place, he's already waving good-bye to an individual's right to privacy. "It's going to take a concerted effort to [legislate] anything back. I'm not sure that we will. I think that privacy is a horse that jumped over the fence, and its rear end is receding in the distance."